Lyme: a four letter word

Australian GPs reveal why they are risking their reputations by diagnosing patients with Lyme disease—from bacteria that are not even supposed to be in Australia. The treatment, high-dose antibiotics, is alarming health authorities and the nation’s chief medical officer has formed an advisory committee to look into this controversial disease. Di Martin investigates.

Originally broadcast 12 May 2013.

A growing number of Australian GPs are risking their professional reputations by diagnosing patients with Lyme disease.

Health authorities say there’s no evidence that Australian ticks carry the Lyme bacteria, and are worried that doctors are being misled by unproven claims about this controversial disease.

Yet GPs say they are seeing patients with Lyme symptoms.

A recent conference organised by a Lyme advocacy group attracted more health professionals than even organisers expected. Thirty-three GPs attended from around Australia, joined by physios, nurses and naturopaths.

A Melbourne GP, Geoffrey Kemp, says he has 55 patients with Lyme disease, or what he calls a Lyme-like disease. Dr Julian Northover from Sydney’s northern beaches said he’d seen five patients with Lyme symptoms in the last 12 months. And from Woombye on the Sunshine Coast, Dr Sandeep Gupta said he has patients with severe ongoing syndromes that don’t fit with any other disease.

There are 18 different species of the Borrelia bacteria that cause Lyme disease. The bacteria have been found on all continents bar Australia and the Antarctic.

It was named after the US town of Lyme, Connecticut, where a country GP questioned an unusual cluster of juvenile rheumatoid arthritis. It was later proved to be caused by a bacterial infection.

This article represents part of a largerBackground Briefinginvestigation. Listen toDi Martin's full report on Sunday at 8.05am or use the podcast links above.

Advocacy groups say Australia may also have its own unique Borrelia species, or overseas Lyme bacteria may have been brought here by migratory birds. There are also claims that the Lyme bacteria could be the cause of chronic conditions like multiple sclerosis or even Alzheimer's. (Editor: Or that some people diagnosed with a chronic condition may actually have Lyme.)

But the medical establishment says there is simply no evidence to back up these claims.

Infectious diseases specialists warn that the medical evidence around Lyme disease is being undermined, that shoddy research and unproven claims are enveloping Lyme ‘in a parallel universe of pseudoscience’.

In response, Lyme groups say there is good clinical evidence to challenge the mainstream view, and Lyme disease is a far greater health threat than is acknowledged.

Chronic Lyme

If caught early, Lyme can be treated with a short course of antibiotics. But if missed, sufferers say it can have devastating impacts.

‘I was very ill,' says Natalie Young, a former NSW parks ranger. 'I had lost 10 kg within two months. I was wetting my bed. I couldn't swallow properly. I couldn't breathe properly.'

She’s been asked to leave NSW hospitals where staff have told her Lyme disease doesn’t exist in Australia.

Ms Young says she has chronic Lyme disease. That the bacterium has evaded initial treatment, has burrowed into organs and tissues, forming cysts, and needs years of high-dose antibiotics to root out.

But it’s a controversial view. America’s Centre for Disease Control (CDC) says there is no evidence the Borrelia bacteria can survive a few weeks of antibiotics. That any further symptoms are not an infection to be treated with antibiotics, but something else, like permanent tissue damage or persistent inflammation.

The CDC also reports four placebo-controlled trials which found long-term antibiotics are not only ineffective, but may be dangerous.

Canberra based infectious diseases clinician and academic Professor Peter Collignon says, ‘Some people want ... an antibiotic called ceftriaxone for instance which is ... one of our critically important or last-line antibiotics, and they want to take that for a year or more. Now I think the evidence for doing that is pretty flimsy.’

Antibiotic resistance

Professor Collignon is on several World Health Organisation panels on antibiotic resistance. Antibiotics not only affect the person who takes them, but will influence the bacteria in everyone around them.

‘So what you do in one individual can be a risk to their family and more broadly the rest of the community,’ Professor Collignon says.

But Ms Young says without her medications she would have died, and she is improving with treatment.

A rural GP from the mid north coast of NSW says two thirds of his Lyme patients are responding to treatment—including high-dose antibiotics. Dr Gull Herzberg says before he learned about Lyme disease it was hard to get an antibiotic out of him.

‘I know that every time I use an antibiotic ... some of those organisms may survive to live another day,' he says. 'And that contributes to antibiotic resistance. I guess I have to balance the risks of that with the risks of not using antibiotics in this particular person at this time.’

Dr Herzberg is based in the country town of Bellingen, a tick infested area. He’s diagnosed 130 patients with Lyme disease.

Because the Borrelia bacteria is very difficult to culture in humans, Dr Hertzberg says it’s impossible to be definitive.

‘I can't tell you it is because they have Lyme,' Dr Herzberg says. 'But it looks like Lyme, they have Lyme in the laboratory, I give them Lyme treatment and they get better. I would like someone to come and pull that apart and show me well why else is this person getting better.’

Testing patience

Lyme testing is hotly contested. Most tests check for antibodies to the bacteria. Australian tests looks for antibodies to the two main Borrelia species found overseas.

Lyme treating doctors say if a patient is infected with a local Borrelia species, it won’t show up on Australian tests. But it might on the US ones which claim to be more sensitive. Patients also say their immune systems are not working properly. So they may not produce enough antibodies to show up in anything but the most sensitive test.

However, a leading Australian microbiologist says that kind of immune suppression is very rare. Stephen Graves says if a person is healthy when infected, their immune system will produce antibodies, which will show up on tests—even if that person later becomes very ill.

Australian infectious disease specialists also question the results from one key US lab where many Australian samples are being tested.

Igenex Inc in California has its own system of interpreting standard antibody tests, which it says will pick up many of the Lyme cases that other tests miss.

But an infectious diseases expert from Western Australia, Miles Beaman, says they are an inferior test.

‘The reason why enthusiasts of Lyme disease send specimens overseas is because Australian laboratories who participate in quality assurance schemes supervised by national bodies have not been able to detect any positives,' he says. 'So they refer the tests overseas at great expense, to laboratories which are not subject to the same stringent licensing controls as Australian laboratories have.’

Igenex also has a chequered past. It’s been investigated by state and federal authorities, and was ordered to shut down in 2001 over irregularities with documentation. Igenex paid fines of nearly $50,000.

Igenex says it is now compliant—and has been for more than a decade.

Patients who’ve had testing at Igenex are quick to defend the lab. Former ranger Ms Young says even though she’s tested negative in Australia, Igenex picked up her illness—which was confirmed by an infectious diseases expert at Royal North Shore Hospital in Sydney.

Doctors ostracised

GPs who diagnose Lyme disease are often ostracised, even though the disease can be caught overseas, and there is a possibility that Australia has its own unique Borrelia species.

‘I've recently been attacked by a local colleague saying that I am a charlatan, that I'm corrupt that I should even talk to people about Lyme disease,' says Dr Trevor Cheney, also from the NSW town of Bellingen. 'And that is the level of passion out there.'

Acknowledging the high stakes involved for both the seriously ill and the rest of the community, Australia’s chief medical officer has decided to step in.

Chris Baggoley has just convened a clinical advisory committee to look into Lyme disease.

‘There are a lot of distressed people, it's a matter of controversy, and it's a matter where people are having very strongly held views, and they are polarised,' he says. 'Where there is controversy, and where I can get people together to look at and consider evidence, and even ask questions of what else might need to be done to help settle this, that would be of useful thing to do. And hence I'm doing it.’

UPDATE: A scoping study identifying research needs for an investigation into the existence of Lyme Disease in Australia has been prepared by John Mackenzie for the Advisory Committee on Lyme disease. September 2013

Scoping Study on Lyme Disease - Scoping study to develop a research project(s) to investigate the presence or absence of Lyme Disease in Australia. John S Mackenzie. September 2013

Transcript

Di Martin: A growing number of Australian GPs are risking their professional reputations by diagnosing patients with Lyme disease.

Health authorities say there's no evidence that Australian ticks carry the Lyme bacteria. Authorities are worried that doctors are being misled by unproven claims about this controversial disease. But GPs say they're seeing an increasing number of patients with Lyme symptoms.

At a recent conference in Sydney, rural GP Dr Trevor Cheney describes one patient, a 52 year old bush regenerator.

Trevor Cheney: So he goes out bush, he cuts trees, poisons weeds and plants new little trees. So he used to get lots of tick bites, and then when he would get a tick bite he would be in bed for a week. So he was getting progressively sicker and he noticed there was a relationship with his tick bites. At the end of the day his wife remembered an erythema migrans rash.

Di Martin: The erythema migrans rash looks like a bull's-eye at the site of the tick bite. Dr Cheney then lists a bewildering and debilitating array of symptoms.

Trevor Cheney: So he presented after a year of overwhelming fatigue, night sweats around 3am, abdominal pain, intermittent diarrhoea, decreased libido, nocturia, tinnitus, vertigo, nausea, postural dizziness, leaning to the left, sensations of buzzing in the head, red spots on his fingers, increasing cramping attacks, insomnia, tingling feet. So there is no anatomical pattern in that. What do you do with that? So he got thoroughly investigated because we don't want to go putting our heads out for something that doesn't exist, we've got to make sure that we are not missing something.

Di Martin: There's no conclusive test for the Lyme bacteria. Instead labs check for antibodies. Australia's reference laboratory tested this patient for Lyme. It came back negative. And then Dr Cheney sent the patient's blood to the US, which came back positive.

Trevor Cheney: The 52-year-old has never left Australia.

Di Martin: So does this case study prove that Lyme disease can be caught in Australia? Later in the program we get an infectious diseases expert to give his opinion.

Hello, Di Martin here, and welcome to Background Briefing.

Rural GP Trevor Cheney is not the only Australian doctor saying Lyme disease is here and making many Australians dangerously ill. In a moment we'll visit one of Dr Cheney's colleagues who's diagnosed 130 Australians with Lyme disease, and who claims that two-thirds of those patients are responding to treatment.

There are increasing calls for in-depth research to see if Australian ticks carry one of the Lyme bacteria. Or even if Australia has its own unique species. But one of Australia's top infectious diseases specialists, Peter Collignon, is urging caution.

Peter Collignon: Well, we've got a fair bit of data that has looked for Lyme disease in Australia by reputable researchers, and despite looking quite hard for it we haven't been able to find it. So my own view is that there is not Lyme disease in Australia on the available evidence. Now, how much more we should look for that is a bit arguable. So we have to have an open mind but that is different to saying we're going to spend millions and millions of dollars trying to find it. We really need a better clue to chase before we spend huge amounts of research and scarce health dollars towards it.

Di Martin: You might note Professor Collingon's use of the term 'reputable researchers' there. Overseas some scientists and doctors are challenging virtually all the established evidence about Lyme disease, its transmission, symptoms, progress and treatment.

Infectious diseases specialists accuse these dissenters of shoddy research, and warn they are developing a parallel universe of Lyme pseudoscience. Now the debate has arrived in Australia. Acknowledging the high stakes involved for both the seriously ill and the rest of the community, Australia's Chief Medical Officer has decided to step in. Chris Baggoley has just convened a clinical advisory committee to investigate Lyme disease.

Chris Baggoley: There are a lot of distressed people, it's a matter of controversy, and it's a matter where people are having very strongly held views and they are polarised. Where there is controversy and where I can get people together to look at and consider evidence and even ask questions of what else might need to be done to help settle this, that would be a useful thing to do, and hence I'm doing it.

Di Martin: Twelve months ago there was barely a murmur about Lyme disease in country towns like Bellingen, on New South Wale's mid north coast. Now it's an open topic of conversation, even at the local Information Centre. Here's volunteer Barbara Towers.

Barbara Towers: I have met a couple of people who actually have been diagnosed with this disease. One person walked into the visitors' centre here and just talked to me about her struggle with getting diagnosis with this disease and her great relief when she was diagnosed. The other gentleman that I know of is the husband of a friend. And he again is very debilitated and now has been diagnosed and it has given them hope. And before that it wasn't on the radar at all.

Di Martin: Growing awareness is welcome news for another local woman. Sara Walker has been diagnosed with Lyme disease.

Sara Walker: I'm pleased to say in the past 12 to 18 months if you say to someone, 'I've got Lyme disease,' they don't look at you blankly any more. They now say, 'Oh I've heard about that, that's awful.'

Di Martin: Sara Walker runs a Lyme support group that's being asked to give talks on the disease to Landcare and local gardening groups.

Sara Walker: And they're asking for this information. People are really very, very concerned, and nearly everybody in those fields knows of someone who has got these weird symptoms and really can't function. Considering their extremely healthy lifestyles, they are not well people.

Di Martin: When Sara Walker is not running the support group, she's working as a speech pathologist, or managing her family's combined illnesses. Sara Walker's husband and two daughters have also been diagnosed with Lyme disease.

Sara Walker: We're just having a little quick family chat, I'm just going to talk about what we're going to be doing tomorrow, we've got to go and see Gull…

Di Martin: Tomorrow is a trip to one of the few Australian GPs that treats for this controversial illness.

Sara Walker: So don't forget I will need to give you some money, girls, for the bus, okay? So please don't let me forget in the morning 'cos you know what I'm like.

Di Martin: Mainstream science argues Lyme disease is a relatively straightforward infection, and the bacteria can't survive a few weeks of antibiotics. Any further symptoms are something else, like tissue damage from the initial infection, or persistent inflammation.

It's a view that angers Sara Walker. She's been ill for more than 15 years, and says there are studies that prove the disease can become chronic, that the bacteria can burrow into organs, become dormant, and can require years of high dose antibiotics to root out.

Di Martin: A recent event in the Walker household goes to the heart of the controversy about treating for chronic Lyme disease, especially with strong antibiotics; 15-year-old Kiri has been hiding her tablets in drawers and dressing gown pockets because they have been making her feel worse.

Sara Walker: Kiri, remember we had the big drug bust, when you were hiding all your tablets, oh goodness me, well, now since you've been back on the tablets you've been getting some pretty heavy Herxs, haven't you?

Di Martin: A Herx is a Jarisch-Herxheimer reaction. Doctors that threat for chronic Lyme say on taking antibiotics, the dying bacteria release toxins that can make you feel much worse before you get better.

Sara Walker: We've got the pain, right side of your neck radiating down your arm, and your resting pulse was really, really high, remember? The numbness in your legs and the pains in your feet, tingling from the knees down, remember that at school?

Di Martin: But conventional medicine says if Kiri's diagnosis is wrong, her Herxheimer reaction could be the side effects of wrongly prescribed antibiotics, or the symptoms of something else altogether. Sara Walker is adamant her husband and daughters are suffering chronic Lyme infections, and they are getting the right treatment.

Sara Walker: I'm not concerned about that at all because clinically we have every symptom and every sign and we are responding to treatment. It's quite clear.

Di Martin: The medical establishment says it's anything but clear. This disease was first described in Lyme, Connecticut, and the US reports at least 30,000 new cases each year. America's Centers for Disease Control says there's no conclusive evidence that Lyme can become chronic. It also lists four placebo controlled clinical trials that show long courses of antibiotics are not effective and in fact can be dangerous.

ANU professor and infectious diseases clinician Peter Collignon says some Australians are taking high doses of antibiotics on the basis of faith, not science.

Peter Collignon: One of the problems is if you do anything to 100 people with a disease, some will get better. They believe honestly it's the drug, but it may be another factor that has got nothing to do with the drug. Now, whether it's holy water, rhubarb, or it's the drug you give, you don't know. And that is why you have to have proper trials done which have placebo arms or control arms.

Di Martin: Peter Collignon says some Lyme treatment regimes rely on very strong IV antibiotics, which risk infections. And he says all antibiotics will have side effects, even tablets. There are also increasingly grave warnings about antibiotic resistance.

Tom Gottlieb is a Sydney-based infectious diseases specialist.

Tom Gottlieb: When you take a drug for heart disease, it has no influence on the people around you. Every time you take an antibiotic it influences your own gut flora, and then of course as you come into contact with other people you influence their flora, on their skin, in their bowels, and therefore your own prescription has an influence on others. And that is what worries us about antibiotic use. If you use it for prolonged periods it clearly has an effect on society.

Di Martin: A GP treating for Lyme disease agrees that antibiotic resistance is a concern. But Richard Schloeffel says all doctors should be able to treat an infection when they see it. He runs a practice on Sydney's North Shore that focuses on chronic conditions. After decades of practice, Dr Schloeffel has come to the controversial view that Lyme disease may be behind many poorly described chronic illnesses.

Richard Schloeffel: Currently I'm treating a number of patients with so-called MS, multiple sclerosis, motor neurone disease, Parkinson's disease, as well schizophrenics who all have been diagnosed overseas with Lyme disease. And I think the sooner we get around off the nonsense that this is not in Australia, and actually start looking at every patient with MS, every patient with Parkinson's, all sorts of motor neurone disease, and strange disorders which can't be diagnosed, we really should be thinking Lyme.

Di Martin: Mainstream science says there is simply no good evidence to back up this claim and GPs like Richard Schloeffel are being hoodwinked by poor overseas testing. Australian tests rarely return a positive result, so chronically ill Australians are increasingly sending blood samples overseas to commercial labs. An infectious diseases professor and clinician from Western Australia says many of those tests aren't up to Australian standards. Miles Beaman is concerned that GPs will see Lyme under the chair of every difficult patient. Professor Beaman says a vague set of symptoms is no sign of Lyme.

Miles Beaman: Proven clinical Lyme disease is actually very recognisable. There are very clear primary, secondary and tertiary phases of the disease. So the vague symptoms that patients who use overseas tests to diagnose their problems are not typical of Lyme disease, they are just typical of any other condition. In fact being alive really is what they are consistent with.

Di Martin: Miles Beaman does acknowledge that Australia might have its own distinct Lyme-like bacteria that doesn't show up on Australian tests.

Miles Beaman: So there may well be strains that we don't know about yet in Australia. However that evidence is insufficient for us to act on a clinical basis at the moment. Although there are many possibilities in medicine, we only act on proven definite cases.

Di Martin: So what advice would Miles Beaman give to those who believe they've caught Lyme disease in Australia?

Miles Beaman: We as doctors just need to be honest and say you've had all the tests that you need to have, we haven't come up with a serious diagnosis and that means that you are most likely are going to have an uncomplicated recovery, given time.

Di Martin: The debate has stirred Australia's Chief Medical Officer to seek out more information. Chris Baggoley recently attended a Sydney conference organised by a Lyme advocacy group. The conference attracted more interest than even the organisers expected. More than 30 GPs turned up, as well as physios, nurses and naturopaths. There were Lyme reports from several states.

Julian Northover: Dr Julian Northover, and I'm a GP in Newport on the northern beaches of Sydney. In the space of 12 months that I have been in practice I have picked up about five patients with a Lyme-like illness that I have on-referred to other GP specialists in Lyme disease.

Sandeep Gupta: My name is Dr Sandeep Gupta, I practice on Woombye on the Sunshine Coast. What we are seeing is that there are definitely some patients who have severe ongoing syndromes which don't seem to fit into any other category.

Geoffrey Kemp: Geoffrey Kemp at Camberwell in Melbourne.

Di Martin: How many patients have you seen that you believe either have Lyme or a Lyme-like disease?

Chris Baggoley: I spoke to a number of doctors who would much rather the patients that had come to them with Lyme-like illness diseases just didn't come to them. They were not seeking to be making a diagnosis of Lyme disease. They were aware that in making such a diagnosis they were going against the prevailing wisdom in Australia, and these were straightforward, down-to-earth GPs going about their work but yet being confronted by something that was asking them to seriously question does this disease exist or not, and their clinical experience was telling them that it does. So I thought it would be folly to ignore the experience of treating professionals.

Di Martin: If you're a country GP, you are forced by your patients to consider all the options. From the mid north coast of New South Wales, Trevor Cheney explains.

Trevor Cheney: One thing that I learnt fairly early in the piece as a GP, especially rural when it is relatively remote, is that eventually people come back and say what next? They have exhausted all the paradigms that you or your professional colleagues have been able to apply to them. And these are not people who are malingerers or looking for a workers compensation solution or something, they are just people who are really unwell. Those people come back to their GP.

Di Martin: Trevor Cheney has taken a sabbatical from his practice to learn more about Lyme and Lyme-like diseases. At the Sydney conference, he presented two case studies he believes challenge the mainstream view on Lyme.

Trevor Cheney: The first one, an 18-year-old high school student. This lady came from the other side of Coffs Harbour to our little town called Bellingen and she came…

Di Martin: Background Briefing has since spoken to this patient. Her name is Kimberley Dean.

Kimberley Dean: I wasn't eating really at all. I was vomiting, and I couldn't have the light in the room because it hurt my head too much. And I pretty much just slept for 20 hours a day and I stayed in the house all that time. It's lonely not going to school with all the other kids and not doing the things that you love because you literally just aren't capable of it.

Di Martin: Kimberley Dean is now a waitress and aspiring dancer living in Canberra. She is convinced her illness came from a tick bite.

Kimberley Dean: I went camping all the time so I got just endless tick bites and I didn't really think anything of them, you know, they're itchy, scratchy, you pull them out and that's kind of it. And then I got sick about 2007 when I was 14 years old. And it started with just a pain in my side, getting really tired, catching everything that was going around, stomach bugs, migraines, colds. And then it got more serious. I saw doctor after doctor after doctor, because they would all try one or two things and then they would go, oh I have a friend or a specialist or this person, and I will send you to them and they will know what's wrong. And then they wouldn't know what's wrong and they would send me to the next person.

Di Martin: So how long did this medical mill go for?

Kimberley Dean: Five years.

Di Martin: And how many specialists and doctors do you reckon you saw?

Kimberley Dean: Over 50, easily.

Di Martin: When Kimberley Dean first went to see Dr Trevor Cheney, she was down to 49 kilos. The first thing he did was to work his way back through her complicated medical history.

Trevor Cheney: She had seen a very good paediatrician, a good gastro, a good paediatric gastro, a good general physician, a very, very thorough general physician, paediatric neurologists, colorectal surgeon, and being a simple naive rural general practitioner, I think, well, what we dealing with?

Kimberley Dean: I got diagnosed with depression, oh, so many times because that's what everyone thought it was. I went to a psychologist and they said no, it's definitely not depression, you seem very healthy and fine mentally, you are sad because you are sick all the time. And I was, like, yes. So other doctors would look at the psychologists' report and they would still say, no, no it's depression, she is so tired, she doesn't want to get out of bed, her immune system is low because she is depressed. And it was really disheartening because I knew that is not what it was.

Di Martin: Kimberley Dean even had her gall bladder and appendix removed. Which she says didn't help.

Kimberley Dean: I guess I understand that they were just trying to do their best, so it's not like I hold a grudge to the surgeon or anything like that. But it feels really confronting, and I regret saying yes to the surgeries.

Di Martin: After Dr Trevor Cheney had run new tests, and excluded everything else, he took up a suggestion from his Bellingen colleague Dr Gull Herzberg.

Trevor Cheney: And we did send blood off to America, because I had just heard from my colleague Gull about this thing called Lyme disease, and I said, look, I don't really know what it is, but if you are willing to give it a go, they were desperate, it's going to cost you a lot of money, we will do it. And of course it came back with positive Borrelia IgM.

Di Martin: That's positive for the Lyme disease bacteria. Kimberley Dean had already tested negative in Australia. The reason for the different results is complex, and hotly debated. Australia looks for antibodies to the two main Borrelia species found overseas. Dr Cheney says if there's a local Borrelia, it won't show up on Australian tests. But it might on the US ones which claim to be more sensitive.

Lyme patients also say that their immune systems are not working properly. So they may not produce enough antibodies to show up in anything but the most sensitive test. However, a leading Australian microbiologist says that kind of immune suppression is very rare. Stephen Graves says if a person is healthy when infected, their immune system will produce antibodies, which will show up on tests, even if that person later becomes very ill.

Stephen Graves also questions the results from one US lab where Australian samples have been tested. IGeneX Inc in California has its own system of interpreting the antibody tests, which it says will pick up many of the Lyme cases that other tests miss. But Stephen Graves says that system does not meet Australian standards, and positive results could be cross reactions to other proteins in the blood.

IGeneX Inc also has a chequered past. It's been investigated by a state and federal authority, and was ordered to shut down in 2001 over irregularities with documentation. IGeneX paid fines of nearly $50,000. IGeneX Inc says it is now compliant and has been for more than a decade.

There's a list of documents on the Background Briefing website about testing, including comments from IGeneX Inc, America's Centers for Disease Control, and Australian specialists.

So, back to the case of 18-year-old Kimberley Dean. At the Sydney conference, Dr Trevor Cheney explains what he and his colleague did after receiving the US test result.

Trevor Cheney: So we took the plunge. We started treating her with doxycycline. Within one month her five years of abdominal pain had gone. She had started eating. Within a couple of months her weight had gone up to 68 kilos. She had a run of antibiotics, herbal therapies, she got better, December she was well, waking refreshed, no pain, finished her HSC, she had missed a year of school, finished her HSC and she is now working in Canberra, full-time, no symptoms.

Di Martin: Trevor Cheney says he doesn't know if his patients have the classic Lyme disease, or another type of the Borrelia bug, or something else again; a Lyme-like disease.

Trevor Cheney: The bottom line is these are very sick people, they have been turned away, nothing was working, and they got better. I don't have any particular commitment to the L-word, Lyme, I don't give a damn. What I'd do know is that I've been in general practice of 15 years and I am motivated by a deep sense of guilt and shame for failing so many people.

Di Martin: In the absence of peer reviewed scientific evidence, GPs who come up with Trevor Cheney's conclusions face a backlash.

Trevor Cheney: I've recently been attacked by a local colleague saying that I'm a charlatan, that I'm corrupt that I should even talk to people about Lyme disease. And that is the level of passion out there, saying this is a filthy thing that doesn't exist and you are all off the planet.

Di Martin: While Trevor Cheney takes time off to present Lyme case studies at academic forums, his old Bellingen practice remains open. There his colleague Gull Herzberg is seeing an increasing number of patients coming in with Lyme symptoms.

Gull Herzberg: I can't tell you that it's because they have Lyme. It looks like Lyme, they've got Lyme in the laboratory, I give them a Lyme treatment and they get better. I would like someone to come and pull that apart and show me well why else is this person getting better.

Dr Herzberg is only seeing Lyme patients today. He's diagnosed 130 people with the disease, and they come from as far away as Perth and Papua New Guinea.

Background Briefing has the permission of patients to record today's consults. First up is Natalie Young, a former New South Wales National Parks ranger. Natalie Young is clearly unwell. She walks slowly, with a slight limp, and is painfully thin. On the day she visits Gull Herzberg she's wearing dark glasses to combat photophobia.

Di Martin: Natalie Young became ill a decade ago after repeated tick bites out bush.

Natalie Young: I was really, really ill. I had lost 10 kilos within about two months. I was wetting my bed. I couldn't swallow properly. I couldn't breathe properly.

Di Martin: She tested negative for Lyme in Australia, yet an infectious diseases specialist at Sydney's Royal North Shore Hospital has diagnosed her with this disease. Natalie Young sees several doctors, including Gull Herzberg.

Gull Herzberg: Have you got a list of topics?

Natalie Young: I've got a list. Apparently I need an ECG. Can you sort one of those out, for my heart. Apparently the Zithromax, you probably know, something has come up about that, Zithromax medication to do with your heart...

Di Martin: Natalie Young is on a very high dose of the antibiotic Zithromax, 1,000 mg a day, and one of the side effects is an uneven heart beat.

Gull Herzberg: We do ECGs for a variety of reasons, in your case it's to check what is going on probably with your QT interval.

Di Martin: Dr Herzberg went on to ask about her medications, which includes a cocktail of antibiotics.

Natalie Young: So many tablets to take.

Di Martin: Natalie Young says without these drugs, she would have died. But it's a punishing treatment regime. She talks of a recent Herxheimer reaction, described as the toxic side effects of dying bacteria.

Natalie Young: Last week I had a really bad week and I did the Bacillin, and I had the Tinidazole pulse, I couldn't take that, my liver was getting taxed.

Gull Herzberg: But you are still on Zithromax?

Natalie Young: Yes, I am still on Zithromax, and I am on Doxycycline 400 mg and I am on…

Di Martin: There are so many drugs because Natalie Young says she's fighting more than one infection. Ticks often carry several bacteria. A US lab says Natalie Young is also infected with babesiosis, rickettsiosis, brucellosis, and the Bartonella bacteria. She describes the combined impact as the equivalent of having malaria and AIDS at the same time. Natalie Young says her Lyme treatment didn't work till she started tackling other bacteria in her system.

Natalie Young: I noticed that what got me to improve a little bit more was the Bartonella treatment. And then the Babesia treatment after that because I was just treating Lyme for so long I just wasn't seeing anything really, improvements. So these co-infections are definitely an issue.

Gull Herzberg: Yep, certainly in you.

Di Martin: It's been a long road for this former parks ranger. But as her most recent tests indicate, Natalie Young is showing signs of improvement.

Gull Herzberg: So your total protein is up, that's great. It was really low over the last few years and it's up in the normal range now.

Natalie Young: I'm starting to fight it because about four months ago I started to get fevers and chills, and for years and years I couldn't crack a fever. So my immune system is starting to want to fight it.

Gull Herzberg: Great. But also you're feeling much better, which is critical.

Natalie Young: Looking back to where I was four years ago, the improvements are massive. From not being able to walk yourself, not being able to get out of bed for two and a half years, it was just incredible.

Di Martin: Later on Background Briefing asked Dr Gull Herzberg about the dilemma of antibiotic resistance. He says before he learnt about Lyme disease, it was hard to get antibiotics out of him.

Gull Herzberg: I know that every time I use an antibiotic in anyone I am exposing a range of micro-organisms to that antibiotic, and some of those organisms may survive to live another day, and that's what contributes to antibiotic resistance. I guess I have to balance the risks of that with the risks of not using antibiotics in this particular person at this time.

Di Martin: So what do you say to people who say you just should not be prescribing such large doses of antibiotics for anybody, there is no evidence to say that it is going to be effective, and in fact you could be exposing your patients to the wrong treatment?

Gull Herzberg: That is a possibility. It is a valid viewpoint. But it's not the only viewpoint. There are lots of doctors around the world that deal with this sort of illness with these sorts of treatment protocols to good effect. I have to consider that with a patient who fits that clinical picture. In some cases I have very good evidence, both clinical and laboratory evidence. And the evidence actually accrues as they respond. I don't start a course of antibiotics and say, okay, this is what we're going to do for the next three years, I adjust it accordingly according depending on how they respond. So if they continue to improve, that makes me feel that we are more on the right track.

Di Martin: Back in his treatment room, Gull Herzberg prepares for his next consultation on the phone. It's with a Queensland man who's tested negative for Lyme disease, even on overseas tests. And tick bites are not part of the clinical picture. But Gull Herzberg is still considering something like Lyme disease.

Gull Herzberg: Well, he has officially got rheumatoid arthritis. He sees a rheumatologist, he is on standard treatment for that. We are suspicious that he may have an infective process underlying his rheumatoid arthritis. He was well and fine, and then he had a whole lot of bites, think he was on a roof somewhere doing some air-conditioning work, was bitten by some insects, as yet unclear what those insects were, had an acute illness and after that he started to deteriorate. So we might call that a Lyme-like disease.

Di Martin: So did he come to you with the diagnosis in mind?

Gull Herzberg: Yes, with the diagnosis in mind, definitely.

Steve: Hello.

Gull Herzberg: Hi, is that Steve?

Steve: Hey Gull, how are you going?

Gull Herzberg: Good, good. Now, I got some blood test results from you just today…

Steve: Oh good, you got them.

Gull Herzberg: I did, and…

Di Martin: They run through a series of test results, and then talk about current symptoms. Steve has complained of groin pain in the past. He says that has improved after taking the antibiotics Rifampicin and Doxycycline.

Steve: I knew that it was helping me, especially how my groin up until yesterday, I overdid it yesterday, has been 80% better.

Gull Herzberg: Just let me ask you, do you think then that the groin has got better as a result…while you have been on these antibiotics for the last month or so?

Steve: Yes. Yes, the Doxy and the other one definitely helped my groin, in my mind.

Gull Herzberg: Gull Herzberg says patients come to him either suspecting they have Lyme disease, or wanting to know that they haven't. Dr Herzberg says he diagnoses about half of his patients with the disease.

Gull Herzberg: I would imagine that it might be half that I would feel confident to say yes, definitely. And that would be not necessarily based on blood test results. Most likely it is based on a really good story, and a response to treatment.

Di Martin: I believe criticism is directed towards doctors who treat Lyme disease in Australia, that you are making a lot of money from very desperate people without conclusive evidence.

Gull Herzberg: I agree that there is a lack of conclusive evidence, but many things in medicine are about a clinical picture. I don't think I'm making a lot of money. It does cost $700 to see me for a two-hour appointment as an initial appointment, that is certainly the case. But I certainly spend a lot of time, effort and energy trying to find out about these things so I can help my patients better, and most people feel that that is worth it. I assume that is why they make the appointment and they keep on coming back to see me afterwards.

Di Martin: People are waiting up to six months to get an initial appointment with Gull Herzberg. He says this is not a question of desperation, but of results.

Gull Herzberg: Actually it seems that a goodly proportion of the people that see me do actually improve significantly, sooner or later.

Di Martin: Is there any way you can put a figure on that?

Gull Herzberg: No…I would guess the third, a third, a third. Maybe a third get better fairly quickly and easily, a third slowly, and a third not at all. It might be that sort of number. But really I don't know. I would be very open to someone coming in and doing a research project on my practice.

Di Martin: Back on the conference circuit we rejoin Dr Herzberg's colleague, Trevor Cheney. He's come to another conference, this time with a far bigger and more sceptical crowd at the plush Hyatt Hotel in Canberra.

Present are the who's who of Australia's infectious diseases community. The mention of Lyme disease here makes eyes roll, and audiences chuckle. Into this lion's den went Trevor Cheney. He and Gull Herzberg have printed a poster of the two case studies they think best challenges the mainstream view on Lyme disease. One case study is the 18-year-old high school student Kimberley Dean. The other, who we heard about at the top of the program, is a more controversial case.

Trevor Cheney: Quickly through the next patient, was a 52-year-old bush regenerator. So he goes out bush, he cuts trees, poisons weeds and plants new little trees.

Di Martin: So is the case that proves that Lyme can be caught in Australia?

Background Briefing invited an infectious diseases specialist to comment on these two case studies. By sheer coincidence, Professor Miles Beaman taught Trevor Cheney, and it's the first time they've seen each other in 20 years.

Miles Beaman: I've told her I have an open mind but we need further data.

Trevor Cheney: That's right, absolutely, and me too. As I said, I'm happy to be proved wrong, I just want help for these guys that are sick, and there are lots of them.

Di Martin: Miles Beaman turns his attention to the poster.

Miles Beaman: My initial impression, this poster describes two patients with acute illnesses which have similarities. They've had a number of blood tests, including serologies which have had a number of low-level positives which are probably cross reactions. And it's proposed that these illnesses are due to a Borrelia which may or may not be Lyme Borrelia.

Di Martin: There are about 18 species of Borrelia associated with Lyme disease. Miles Beaman says we will only know for sure if these people have Lyme once the bacteria has been cultured. While it's difficult to culture in humans, Professor Beaman says it's not in ticks.

Miles Beaman: The data which is missing is any tick data, because what is striking about Lyme disease is that if you have an endemic region where people get real cases of Lyme disease, the ticks are full of the organisms.

Di Martin: A major Australian tick study 20 years ago failed to find any Borrelia. Research since then has been inconclusive. Now there's a new study underway at Sydney University which is checking ticks from around Australia, including the Bellingen area. A report is due by year's end.

Miles Beaman says Dr Cheney's case studies do need following up. But he says the term 'Lyme disease' is a distraction.

Miles Beaman: It would be sensible to restrict it at the moment to borreliosis because there are some suggestive serology tests. They are by no means definitive. And what I want to find is either the bug itself in patient tissue or in the vectors, the ticks, and that would really prove the hypothesis.

Di Martin: But Lyme or not, the treatment is learned from Lyme disease, and was successful in both these cases. So what does that indicate?

Miles Beaman: It just indicates that if you have a patient with a possible infectious disease and you give them a number of antibiotics then you have a chance of affecting the unknown organism that is involved. It doesn't really help us in the diagnostic situation.

Di Martin: Miles Beaman agrees that more assistance should be given to rural GPs such as Trevor Cheney, like in the US, where the Centers for Disease Control has an investigation arm.

Miles Beaman: And we've got to remember the history of Lyme disease. This was actually worked out in precisely these circumstances; country GPs noticing funny clinical syndromes. And the CDC actually has doctors that they fly out to investigate on the ground these sorts of novel illnesses. In Australia we don't have that mechanism unfortunately. So there is a degree of lack of organisation in Australia which frustrates dealing with these sorts of problems.

Di Martin: What Background Briefing discovered later though is that Trevor Cheney is actually related to one of his case studies, the Bellingen bush regenerator.

Di Martin: Is this your brother?

Trevor Cheney: Yes.

Di Martin: Is there a conflict of interest here? Should you not be using your brother as a case study?

Trevor Cheney: No, absolutely not because there is no conflict of interest. Let the science do the talking. Let's look at this clinical case, let's look at the evidence, let's look at the supporting serology, the progress of the case, response to treatment. Whether one knows these patients, in a small town mind you, where you know most people anyway, whether one knows them closely, whether one knows them business-wise, or whether one knows them by family, those things are distractions to the evidence I was putting forward as a case.

Di Martin: But it does leave you open to criticisms that it is not independent research, and in fact it may be research clouded by your personal feelings.

Trevor Cheney: I can imagine somebody who is looking to attack the medicine and the science by any means that they possibly could and do personal attacks as opposed to looking at the medicine might want to try and do that, which is why I saw no relevance in making it obvious.

Di Martin: Dr Trevor Cheney.

A Commonwealth advisory committee will investigate the Lyme issue for the remainder of this year, looking at both research and clinical findings.

People from both sides of this passionate debate are on the committee, and will try to answer key questions. Is the Lyme bug in Australia? How do GPs diagnose it? And what to do about testing and treatment.

Chris Baggoley: I think the whole area of Lyme disease is poorly understood and that's why I'm trying to see whether we can bring any understanding to the topic. Where we will end up at the end of this, I'm not sure. Will we still end up with two very polarised views strongly held? We may. Hopefully though, if we do nothing else, if we can at least provide service and certainty and advice to the treating doctors of Australia about the agreed protocol for laboratory testing and the best treatment options, then we will have done something that is important.

Di Martin: For more information, or to make a comment on this program, go to the Background Briefing website.

Co-ordinating producer is Linda McGinness, research by Anna Whitfeld, technical production by Andrei Shabunov, and Chris Bullock is executive producer. I'm Di Martin.